Jo Yurcaba

Texas mom Annaliese Cothron drove an hour and a half from her home in San Antonio to the state Capitol in Austin this year for a rally in support of transgender children, including her own child. It’s a drive she has made so many times that she has lost count.

Trans youths in the state have been the targets this year of more than 50 bills that would restrict their participation in sports or ban them from gaining access to certain health care, among other restrictions.

Cothron was leading the crowd in a chant, but she started to get tired. So she asked the Rev. Remington Johnson, a Presbyterian clergywoman and a fellow activist, to take the bullhorn. 

Johnson, a trans woman who has testified almost a half-dozen times against anti-trans bills, had shown up that day riding a longboard, wearing hot pink shorts and carrying a huge trans flag, Cothron recalled. She took the bullhorn, and the first thing she said was: “Trans kids are magical.”

Cothron, who has an 8-year-old child who is nonbinary, said the moment has stuck with her.

“That, to me, was so powerful,” she said. “Nobody talks about my child like that, because they don’t have the same experience that a trans person has to know really how truly unique and magical and powerful transgender children are.”

Johnson, a health care chaplain who previously worked in a hospital supporting people who are sick or dying, said her role in life is to be a caregiver and a “justice bringer.” She returns to the Capitol again and again despite the toll it has taken on her physically and emotionally, not only to advocate for herself as a trans woman, but also to bring some levity to a space that has been traumatizing for trans people and families.

“The caregiving at the bedside, the caregiving at the Capitol — it’s all one and the same,” said Johnson, who is working on her master’s degree in nursing at the University of Texas at Austin. “These are all systems, and there’s suffering swirling, and I feel like my role and my responsibility here is to at least show up.”

Activism as an ‘exercise in self-love’

Johnson, 35, grew up just outside Texas in the rural Oklahoma Panhandle, in a family with Mennonite roots. She said she wasn’t raised with liberal or conservative ideals; she was “kind of raised tabula rasa” — her parents would encourage her to put herself in other people’s shoes. 

Johnson said that in junior high school, she had an experience with her family that made her feel as though she couldn’t talk about her identity openly. One evening, while her family was visiting the gay-friendly beach town of Provincetown, Massachusetts, two tall women walked past, she said. 

“I remember as a kid just being like, ‘I don’t know what that is, but I love everything about it,’” Johnson said. “I don’t know if they were drag queens or trans women or what, but it was magical. But that was also the same moment where I got to hear from family members about how they were not OK with those folks. So it was this sort of whiplash.”

She said her coming out process was gradual after that. She told a therapist in college how she was feeling about her gender, and the therapist suggested that she might be a trans woman, “and I was like, ‘Thank you very much,’ and I never went back,” Johnson said.

She wrestled with internalized transphobia — a battle that continues to this day and plays a role in her activism, she said. 

She moved to Texas in 2008. Nine years later, Texas Republicans introduced a bill that would have required trans people to use the bathrooms that matched the sexes listed on their birth certificates. Although Johnson was out as trans at that point, she said, she didn’t feel ready to participate in activism, because she felt she “was the problem.” 

“I just felt like I was the boogeyman that Republicans were talking about, because I was this huge, built, powerful figure that was going to be using the restroom with them,” she said. She didn’t feel ready to advocate then, but when the 2020 legislative session began, she decided she wanted to be there.

“I want to show up for me and because a lot of the things that these legislators and anti-trans folks were saying are things that my loved ones have said to me during my transition and internalized transphobia that I say to myself,” she said. “So some of this is an exercise in self-love and self-compassion and a tangible reminder that there’s nothing wrong with me.”

‘Fixing things is what I do’

Among the families who are fighting anti-trans bills at the Capitol, Johnson’s presence is known as healing. She developed that skill, putting people at ease, during her work as a health care chaplain, when she would help people make difficult decisions, such as whether to go through with high-risk operations or to go home with hospice, or end-of-life, care.  

She said she introduced herself to a woman in hospice care as “a fixer.” The woman responded “What are you going to fix?” and Johnson said, “I’m going to fix it.”

“And I did, I fixed it,” Johnson said. “I couldn’t cure her cancer, but I could help her build a relationship with her care team. I can help her build a relationship with her family.

“Fixing things is what I do,” she added. 

Even outside of her activism, in her personal life, she fixes. She took up woodworking and built the cabinets and the countertops and redid the flooring and the windows in her last home. During the pandemic, she taught herself how to longboard, and she now builds her boards herself. 

Her friend Meghan Jacobson said fixing things and caring for people are at the core of who Johnson is. 

“She worked in hospice because she recognizes the specialness and the importance of these moments that a lot of other people run away from,” Jacobson said, adding that Johnson saved her life over the last year by connecting her with a mental health care provider and by simply being there to support her. 

Parents who advocate on behalf of their transgender children at Texas’ Capitol tell similar stories. 

Linzy Foster, who is from Austin, has been to the Capitol about a dozen times this year to advocate on behalf of her 7-year-old trans daughter. She said that she has been dealing with a lot of anxiety recently and that during a news conference last month, she was breathing heavily. Johnson, who was sitting next to her, noticed.

“She just put her hand on my back and was rubbing my back, and we just had this little moment,” Foster said. A reporter from the Austin American-Statesman captured a photo; Foster said that when she saw it, she “burst into tears.” 

“Because it’s just symbolic — she is fighting her own battle, but she keeps showing up for the parents so that we can show up for our kids,” Foster said. 

The energy at the Capitol is often heavy and traumatic for parents, Foster said, and Johnson makes everyone laugh. 

For example, at one news conference, Johnson described how Republican legislators in Texas and elsewhere tried to pass bathroom bills after the Supreme Court ruled in favor of marriage equality in 2015. “What happens is they try to vilify women like myself who have a little bit of size, and we’re just too charming and beautiful to want to pee next to,” she said, leading to a chorus of laughs.

Johnson said she tries to bring humor and joy to her activism because she wants trans people watching “to feel safe, at least for a tiny moment.” 

“I want them to see somebody that gets to stand up in front of them, and I want to feel like I’m a good representative,” she said. “I want to feel like the mothers can look and say, ‘Oh my gosh, my child can grow up and it’s going to be OK.’ I want to offer a tiny moment of levity and power and hope.”

‘This is not trans tragedy. This is trans joy.’

Although someone wouldn’t know it by watching her speak at the Capitol, Johnson said that she has been traumatized by her activism this year and that the trauma is getting worse as she continues to go back.

She compared the experience to a sports injury. Sports have been and still are a huge part of her life — which is partly why she fights so hard for trans kids to have the right to play. She plays on a gay flag football team in Austin.

“Showing up to the Capitol is like playing through an injury,” she said. “There has been a traumatic injury to my soul. And I see it, and I’ve had it checked out by professionals, and they say, ‘You can keep playing on it, but it’s going to hurt you.’”

But she stressed that activism isn’t only about trauma. She said that after the Supreme Court ruled last year that LGBTQ people are protected from employment discrimination under federal law, she rode 26 miles around Austin on her homemade longboard carrying a huge trans pride flag. “People were honking and stopping for photos,” she said. “It was really special.”

For Cothron, Johnson’s positivity and joy show her that her nonbinary child can grow to thrive. 

“This is not trans tragedy. This is trans joy,” Cothron said. “And Remington is there to really embody that. … To me, my child being able to have role models who are adults and fighting — and not just fighting but also thriving — that is just so critically important.”

For Johnson, that’s the trans experience: “to be able to go through discomfort and come out on the other side with this buoyant, joyous presence,” she said. “That’s who we are. That’s who I am.”

Rachel Gonzales has been to the Texas Capitol at least a dozen times since 2017, when she advocated against a bill that would’ve banned her then-6-year-old transgender daughter, Libby, from using the girls’ bathroom.

That bill died in 2017, but the fight hasn’t stopped. Since January, Texas has considered 52 bills that target trans people, particularly youth, according to Equality Texas, an LGBTQ advocacy group in the state.

Parents like Gonzales and advocates have defeated all of the bills so far. But last week, during a third special legislative session, the Texas Senate passed a bill that would ban transgender student athletes in public schools from competing on school sports teams that align with their gender identity, as opposed to their sex assigned at birth.

State Sens. Bob Hall and Charles Perry, both Republicans, also refiled bills last week that would ban health care providers from providing trans children with gender-affirming health care — including therapy — and that could charge parents and doctors with child abuse if they provide such care for trans children.

Texas moms rally against dozens of state bills targeting transgender children

OCT. 1, 202104:56

Gonzales said she will continue to fight the bills, but she added that she is so burnt out by the last nine months that she doesn’t feel like an effective advocate. 

“I joke, but it’s not really a joke, that I have definitely lost years off my life from this battle — the amount of stress, the physical manifestation of that stress and the mental anguish,” she said. “It’s so much of negotiating my own feelings in order to assure my kid that she’s going to be OK. But it’s terrifying that I don’t know if it’s going to be OK, and not just for her, but for other kids across the state, kids who cannot safely be out.”

It’s taken a mental and physical toll on her, she said, and other parents and advocates in the state say the same. They say they won’t stop, because they’re doing it for their kids, but they need more help.

‘It takes me hours to fall asleep’

Supporters of trans athlete bans in Texas say they are trying to protect fairness in women’s sports, though — like most supporters of similar bills — they haven’t been able to provide any examples in their state of trans girls jeopardizing fairness, according to LGBTQ advocates. 

Proponents of bans on gender-affirming care such as puberty blockers say the care is “experimental” and that children are too young to receive it. But medical experts who provide gender-affirming care say it is supported by all relevant major medical organizations, such as the American Medical Association, the American Academy of Pediatrics and the American Psychological Association. Some of these groups note that gender-affirming care is backed by decades of research and has been used to treat cisgender kids experiencing precocious puberty, for example.

Parents like Gonzales have been fighting the bills so relentlessly because they say the proposals, whether they pass or not, have a devastating effect on trans youth in the state — especially youth who help advocate against them.

Libby, Gonzales’s 11-year-old daughter who is transgender, said the anti-trans bills reintroduced by Republican state senators make her “feel really scared and like they are trying to harm me in very terrible ways.”

She first became an activist at 6 years old, when conservatives in the state tried to pass a billthat would’ve banned her from using the girls’ restroom. Libby said being an advocate is important to her because if she wasn’t, “I would be really hurt, and people wouldn’t hear me.” 

“It is very tiring,” she said. “Sometimes it takes me hours to fall asleep just because I’m so scared about these specific bills.”

Rebekah Bryant, who lives in Houston and has been to the Capitol six times this year to advocate against the bills, said they’ve also affected her 8-year-old trans daughter, Sunny.

Sunny has testified against the sports bills twice, in July and August. The first time she testified, she told the Senate committee she likes baseball, soccer, tennis and gymnastics, and that none of her teammates cared that she is trans. 

“I’ve been with the same classmates for three years, and none of them knew I was trans until this year,” she said. “When my mom had to speak at the Capitol, they loved me just the same, because kids my age don’t care about that stuff. Kids care about what’s in your heart.”

“Only old people can’t see that,” she added, with a smile. Committee members, including Republicans, laughed, Bryant said.

The second time she testified, Sunny didn’t step up to the podium — which was taller than her — until 1 a.m. Afterward, when she and her mom got back to their hotel room, Sunny sat down on the bed and started crying.

“She said, ‘Why do so many people not like me?’” Bryant said. “And that’s the first time she’s expressed any pain toward this. I was exhausted, and I just said to her, ‘Look, there are way more people there that love you. … There are so many more people in the world that are on your side than aren’t. Those people are the outliers.’”

She said Sunny developed anxiety afterward. Though it’s slowly gone away, Bryant hasn’t brought Sunny to the Capitol again.

Advocates say the rhetoric used in the bills has also had a negative effect on the mental health of transgender — as well as lesbian, gay, bisexual and queer — youth statewide.

For example, between Jan. 1 and Aug. 30, crisis calls from LGBTQ young people in Texas increased 150 percent compared to the same period last year, according to data shared last week by The Trevor Project, an LGBTQ youth suicide prevention and crisis intervention organization. About 4,000, or 36 percent of all contacts from Texas, came from transgender or nonbinary youth.

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The Trevor Project added that while the volume of crisis contacts “can not be attributed to any one factor (or bill),” a qualitative analysis of the crisis contacts found that “transgender and nonbinary youth in Texas have directly stated that they are feeling stressed, using self-harm, and considering suicide due to anti-LGBTQ laws being debated in their state.” 

The Trans Lifeline, the country’s first transgender crisis hotline, also saw a 72 percent increase in calls from Texas in May — when state lawmakers first considered about a dozen anti-trans bills — when compared to May 2020, according to data shared with NBC News. In July, when the legislation was reconsidered, Trans Lifeline saw a 19 percent increase in calls from Texas. 

Adri Pèrez, policy and advocacy strategist for LGBTQ equality at the American Civil Liberties Union of Texas, said it’s unclear whether Texas’ trans athlete ban will pass the House and become law and that its passage “shouldn’t be the focal point.”

“The larger issue, I think, is out of the state of Texas there is a lot of misinformation about transgender people and transgender youth, specifically,” Pèrez said. “The work is not necessarily inside of the Texas Legislature; it’s outside of it. And what we’re doing to help humanize trans people and trans youth to those who have never met a transgender person or a transgender kid, that would be the most effective firewall for these bills. It’s not letting that misinformation take hold at all.”

Whether someone knows a transgender person can significantly affect their views on legislation such as trans athlete bans, according a survey released Thursday by the nonprofit Public Religion Research Institute. A slim majority of Americans who know a transgender person (52 percent), compared to one-third of Americans who do not know anyone who is transgender (33 percent), believe that a transgender girl should be allowed to compete in high school sports with cisgender female students. 

PRRI also noted that support for trans people participating in sports has declined since 2018. About one-third, or 36 percent, of Americans believe that trans girls should be allowed to participate in sports with their cisgender classmates, compared to 50 percent in 2018.

Physical, mental and financial strain

Parents who are transgender advocates say Texas’ last few legislative sessions have been particularly difficult for them, too.

Bryant said this is the first year she’s become more active, and it has taken an emotional and financial toll on her family. She said she has to take off work to travel to the Capitol, which is about a 3 1/2-hour drive away, and she often has to book a hotel room. All told, she said she’s spent close to $3,000 going back and forth to the Capitol just this year.

“It’s just so draining, because it’s not only just sitting there and waiting, but it’s sitting there and listening to people lie about you and your family — people that have never met a person who’s trans in their life and really haven’t walked the walk that all of us have,” she said.

Recently, many parents and advocates have been hitting “a wall,” said Linzy Foster, who is from Austin and has been to the Capitol about a dozen times this year to advocate on behalf of her 7-year-old trans daughter.

“The general population who usually are all on board and showing up and fighting for these things, they’re getting fatigued, and there’s also so many things to fight now,” she said. “We’re beginning to feel more and more lonely.”

Many of the advocates described being at the Capitol as traumatic. Annaleise Cothron, whose 8-year-old is nonbinary, said one day she went to the Capitol and the supporters of anti-trans bills called her child “a freak” and “disgusting.”

“While I would never tell my child that, just hearing that from somebody else is really emotionally taxing, and my child doesn’t deserve that,” she said. “People need to understand that’s the level of vitriol that we’re facing just going to the Capitol to say, ‘Please leave us alone. Please leave our community alone.’ This isn’t about politics; this is about human beings.”

More than just sports

Though the parents and advocates believe that trans kids have a right to play on the sports teams that match their gender identity, they said their advocacy is about more than just sports.

“Just the conversation of whether or not my child should exist in public school sports and whether or not other kids should bully them for who they are — that’s the conversation that this legislative body is inviting by entertaining these bills,” Cothron said. 

She said the other bills that Republicans have reintroduced or plan to reintroduce that could charge her with child abuse for providing her child with access to gender-affirming care prove that the conversation is about more than fairness in sports. 

“This is about the broader conversation of saying whether or not a transgender child should exist in Texas and access public services,” she said.

For now, the parents say they are leaning on each other for support.

“The only reason I’m doing OK, to be honest with you, is because in all of this I have met these amazing people in this community who show up, and we support one another,” Foster said. “We have moments of levity even in the trauma that we’re dealing with when we’re in the Capitol, being able to make each other laugh, knowing that you’re loved, knowing that you’re supported. That is the only thing that’s keeping me going.”

Alejandra Caraballo, 30, spent three years and countless hours after work — which “felt like a second part-time job” at times — putting together hundreds of documents to get her health insurance to cover her facial feminization surgery. 

She even planned to sue her nonprofit employer, the New York Legal Assistance Group, or NYLAG, and the insurance company it used, UnitedHealthcare, in the spring of 2019 for denying the coverage. 

“My own clients at NYLAG were getting it covered under Medicaid, no issue,” she said. “And I, having private insurance, was having it consistently denied and, not to mention, working at a place that prides itself on inclusion and diversity and being social justice-oriented in terms of providing direct legal services to low-income New Yorkers.”

She said that she had lobbied for policy change but that when she met with NYLAG’s general counsel, she was told that the organization didn’t view the explicit exclusions for certain gender-affirming operations and voice therapy for transgender people as discrimination. 

“It felt really invalidating and just like I wasn’t being heard,” she said, adding that she is a lawyer who knows the case law that affects the issue.

She started preparing her lawsuit, but then, in May 2019, her employer told her that it would be switching insurance plans to Cigna, and she had to start all over again. 

After the switch, in July 2019, Cigna approved the first part of her surgery, which took place in October 2019, but when she tried to get the second part covered in June 2020, it denied the claim, she said. The New York Department of Financial Services overturned the decision in August and forced Cigna to cover the surgery, which she had in October. 

“I did quite an ordeal in terms of getting this covered, and I say this with the tremendous privilege that I’m an attorney who’s connected in the trans rights movement,” said Caraballo, who is now a clinical instructor at Harvard Law’s Cyber Law Clinic.

NYLAG said that Caraballo was “a valued member of our team” and that it advocates alongside its team members “as they may experience and navigate life’s systematic inequalities and inequities.” 

“At NYLAG we aim to create an environment that supports all NYLAG employees during their employment, which includes making available the best options for insurance, qualified by the state of New York,” Jay Brandon, NYLAG’s director of external affairs, said in a statement. “We wish all our former employees the best in their personal endeavors and support Alejandra’s continued fight for equitable coverage from her insurance provider.”

A spokesperson for UnitedHealthcare said the company can’t comment on specific cases. The spokesperson said coverage for the treatment of gender dysphoria may include physicians’ office visits, mental health services, prescription drugs and surgical procedures. 

“Our mission is to help people live healthier lives regardless of age, race, ethnicity, sexual orientation or gender identity,” the spokesperson said in a statement. “Our customer service advocates are trained to help people navigate the health care system by matching them with experts who guide them when they have questions, and we have a special gender identity team to support members through their transition.”

A spokesperson for Cigna said gender-affirming treatments “are covered in all of our standard commercial health plans when medically necessary.” 

“As this field evolves, we’re seeing more of our clients opt to expressly include additional procedures like facial feminization surgery and voice therapy,” the spokesperson said. “We also regularly evaluate and update our gender dysphoria coverage policies, informed by the latest clinical guidance and expert consensus, including leading organizations like” the World Professional Association for Transgender Health, or WPATH, a nonprofit organization devoted to treating and understanding gender dysphoria. 

Caraballo’s experience echoes that of many transgender people who have tried to get gender-affirming care, particularly operations, covered by their insurance — whether it’s publicly or privately funded. Trans people describe months and sometimes years of effort to get their insurance companies to cover care recommended by their doctors.

Majority report being denied care

Although many insurance companies and some politicians describe gender-affirming surgery as cosmetic, major medical organizations say it is medically necessary. 

Surgical intervention is one of many treatments for gender dysphoria, which refers to the psychological distress that results from an incongruence between one’s sex assigned at birth and one’s gender identity, according to the American Psychiatric Association.  

WPATH, which is considered the governing body on the issue, wrote in a “medical necessity statement” in 2016 that “medical procedures attendant to gender affirming/confirming surgeries are not ‘cosmetic’ or ‘elective’ or ‘for the mere convenience of the patient.’”

“These reconstructive procedures are not optional in any meaningful sense, but are understood to be medically necessary for the treatment of the diagnosed condition,” WPATH wrote. “In some cases, such surgery is the only effective treatment for the condition,” and for some people, genital surgery, in particular, is “essential and life-saving.” 

Despite the medical necessity of gender-affirming care as stated by physicians, many trans people who have insurance — about one-fifth have reported that they don’t — say they have struggled to get coverage. 

A report last year from the Center for American Progress found that 40 percent of transgender respondents — and 56 percent of trans respondents of color — said their health insurance companies denied coverage for gender-affirming care, which includes treatments like hormones and surgery. It also found that 48 percent of trans respondents, including 54 percent of trans respondents of color, said their health insurance companies covered only some gender-affirming care or had no providers in network. 

Dallas Ducar, CEO and a co-founder of Transhealth Northampton in Massachusetts, said she was shocked by the “endless barriers that exist for patients seeking to transition.” 

“For cisgender individuals, hormonal replacement, puberty blockers are really easily accessible, and they’ve been used in the past to treat precocious puberty,” she said. “Hormone replacement therapy has been beneficial for endocrine, cardiovascular conditions, and trans people are burdened with paperwork, psychiatric assessments, insurance pre-authorizations.” 

She said that most of the people in power — clinicians, politicians and people who work for insurance companies — are cisgender, meaning they identify with the genders they were assigned at birth, and that they have created systems that have reduced access to quality gender-affirming care. 

“Those barriers that exist and that numerous amount of paperwork or assessments that you have to go through are really, really harmful, and they add to the layers of discrimination that exists within the trans community,” she said. 

Yearslong battles and hefty loans

Alex Petrovnia, 24, and his partner, who are both transgender men living in central Pennsylvania, faced barriers similar to Caraballo’s when they tried to get UnitedHealthcare to cover their hysterectomies. Petrovnia said that twice — in February and in April — United called them less than 24 hours before their operations and said their claims had been denied. The first time, Petrovnia said, the company said it was because Petrovnia and his partner hadn’t sent the required paperwork, even though Petrovnia said he had faxed it three separate times months in advance.

Petrovnia had received two letters — one from a doctor and one from a therapist — confirming that a hysterectomy was necessary for his gender dysphoria, but he said the UnitedHealthcare representative told him that he needed a letter from another therapist.

He said that the second time their operations were denied, UnitedHealthcare called them when they were on their way to the hospital — just hours before their scheduled procedures — and said they were required to have been on hormone replacement therapy for one year before they could get hysterectomies. Petrovnia said the policy he had at the time said the requirement was only six months. He wrote about the experiences on Twitter.https://iframe.nbcnews.com/MgfYrb6?app=1

He and his partner have been on hormone replacement therapy for a year as of last month, so he said they plan to try to reschedule the procedures for December. 

“If they’re willing to just make up the rules and contradict their own rules, it’s very difficult to have hope that it’ll work out, especially since it’s been canceled less than 24 hours in advance twice now,” he said. 

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UnitedHealthcare said it couldn’t comment on Petrovnia’s case.

Some government-funded insurance bans gender-affirming surgery outright in certain circumstances. For example, TRICARE, the military’s self-funded health insurance for service members, “generally doesn’t cover surgery for gender dysphoria,” according to its website. Active-duty service members can request waivers if their providers deem the surgery “medically necessary,” but waivers aren’t available for dependents — spouses and other family members. 

That meant that when Jamie Traeger, whose spouse is an officer in the Army, filed a claim to get a double mastectomy in early 2019, TRICARE denied it outright even though three doctors had said the procedure was medically necessary. 

Traeger, who uses gender neutral pronouns, said that they considered getting a job at Starbucks so they could have insurance that would cover the procedure but that they and their spouse decided to take out a $10,000 personal loan, instead. 

“I just remember thinking this is crazy — that Starbucks has better trans health care than military family members,” they said.

Traeger, 32, said they were able to get a hysterectomy covered in 2016 because they emphasized that it would treat their uterine fibroids and avoided any mention of gender dysphoria.

“I remember the doctor saying, ‘I’m going to write this [claim] up in a very specific way, because if I indicate that this is because of gender dysphoria, TRICARE might give us a problem,’” Traeger said. 

Traeger said they were happy when they saw the news in July that the Department of Veterans Affairs was changing its policy to cover all gender-confirmation procedures for trans veterans. 

It’s “fabulous and long overdue,” they said. “But I just remember having this sinking feeling of … we’re getting left behind — the spouses and children of active-duty service members are getting left behind. We don’t have access to this care, and I feel like no one really knows that.”

The Military Health System, which oversees TRICARE, hasn’t responded to a request for comment.

A public policy ‘marble cake’

No one policy governs how insurers cover gender-affirming procedures. 

Lindsey Dawson, an associate director at KFF (formerly the Kaiser Family Foundation), a nonprofit organization focused on health policy, described state laws as a “patchwork.”

Twenty-four states and Washington, D.C., prohibit transgender exclusions in health insurance coverage, according to the Movement Advancement Project, a nonprofit think tank. Twenty-three states, one territory and Washington, D.C., have Medicaid policies that explicitly cover transition care for transgender people. The remaining states have a mix of policies: Some don’t have any Medicaid policy that explicitly covers transgender care, 10 states have Medicaid policies that explicitly exclude trans health coverage and care, and one state — Arkansas — allows all insurers in the state to refuse to cover gender-affirming care. 

“A clear federal protection for gender identity and sexual orientation would eliminate this sort of patchwork issue that we’re facing in the states right now,” Dawson said. “But right now that environment is in flux.” 

The Obama administration interpreted Section 1557 of the Affordable Care Act, which prohibits discrimination based on sex in federally funded health care facilities, to include discrimination based on sexual orientation and gender identity, but “the Trump administration essentially erased those protections,” she said. 

The Biden administration has yet to issue a new rule regarding its interpretation of Section 1557. In the meantime, the Office of Civil Rights at the Department of Health and Human Services said it would enforce Section 1557 to prohibit discrimination based on LGBTQ status. That, however, requires people to file legal complaints, which Dawson said is “kind of a patchwork approach to equity.”

Some cases regarding state health plans are still ongoing: The 4th U.S. Circuit Court of Appeals ruled this month that trans people who are enrolled in the North Carolina State Health Plan can sue over the state’s 2018 policy that excludes all coverage for gender dysphoria counseling, hormone therapy, surgical care or other treatment.

Blue Cross and Blue Shield of North Carolina also changed its policies in July to include coverage for gender-affirming facial surgery and voice therapy as medically necessary care.

Forcing insurance companies to cover all gender-affirming care, including operations, would be difficult, said Caraballo, the former NYLAG lawyer, because the issue is a “classic public policy marble cake,” meaning it’s governed by state, federal and sometimes local laws. 

She said the Department of Health and Human Services’ Office of Civil Rights could address the issue in a few ways. One of the easiest would be for it to use its enforcement authority to crack down on insurance companies that exclude coverage for gender-affirming care, she said.

States could also pass their own legislation. She cited Washington, which passed legislation in May that requires all insurers in the state to cover gender-affirming care, including operations. 

She said that, in the end, she got her surgery covered but that her case is an outlier.

“There’s so many people that are going through the same thing,” she said. “I’ve spoken with so many people who, they see those exclusions, they don’t even try.”

For three years, Jesse Brace avoided getting care for their seizures after they experienced discrimination at an emergency room near their home in Lawrence, Kansas, in 2017. 

They said they told the staff that they are transgender and nonbinary, that their name is different from their legal name and that they use gender-neutral pronouns.

“They refused to even so much as acknowledge this information, and not only did they not use [my pronouns], but they also sent me home without treating me for what I went in for,” said Brace, 25. 

When they tried to get care elsewhere after that, they said, they had similar experiences, so they avoided care entirely. 

In 2018, they began having seizures every day, so they started living in their car outside the Amazon facility where they were an assistant operations manager, because they couldn’t drive themself to work anymore. 

In November 2018, they lost their job. “I lost my car soon after and ended up on the streets in the winter,” they said. “I was having hundreds [of seizures] a day and wasn’t even leaving where I was laying.”

They were homeless, living out of their car or on the streets, for over three years. 

Brace’s experience in the ER — and the impact that health care discrimination had on their life — is something many trans people face and fear when they try to get care, according to a report released Wednesday by the Center for American Progress, or CAP, a liberal think tank. 

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Discrimination, among other factors, prevents trans people from seeking necessary care, which leads to health disparities that can affect many other areas of their lives, the report found.

The authors outline a road map of solutions, including legislative protections for LGBTQ people and better competency training for medical providers.

“The onus should not be on individuals,” said one of the report’s authors, Sharita Gruberg, vice president of the center’s LGBTQ Research and Communications Project. “It really should be on these institutions to do the right thing, and the resources and guidance is out there.”

Forgoing routine care after trauma

CAP’s report found that nearly half of transgender people — and 68 percent of transgender people of color — reported having experienced mistreatment at the hands of a medical provider, including refusal of care and verbal or physical abuse, in the year before the survey, which took place in June 2020. 

Discrimination can then prevent people from seeking future care, the survey found: 28 percent of transgender people, including 22 percent of transgender people of color, reported having postponed or not gotten necessary medical care for fear of discrimination.

Brace got another job in May 2019, but they said they weren’t able to get consistent care again until May of this year. They said doctors in the area repeatedly told them that they were unable to take on new patients. It wasn’t until Brace was referred to a doctor who has a transgender child that they were finally able to obtain a primary care physician.

“I get panic attacks just making appointments,” they said. “I have no support whatsoever. Unfortunately, all health care around here is like this. There is no support for trans people, and so most avoid seeking care.”

Dallas Ducar, a psychiatric nurse practitioner, opened Transhealth Northampton, a trans-led organization that provides health care to trans and gender diverse patients in western Massachusetts, in May. Ducar said that as a health care provider and a trans woman, she knows there’s a dearth of affirming care for trans people across the country.

She said many of Transhealth’s patients have gone without medical care for long periods of time. A patient who came in a couple of months ago had abnormal vital signs and had to be quickly taken to an emergency room because they were so sick, she added.

“It’s unfortunately not uncommon to see people who have experienced such high levels of discrimination and then forgo the routine visits, then perhaps even forgo an urgent care visit, which then turns into an emergency care visit,” she said.

The CAP report said harassment and discrimination “contribute to high rates of stress,” and — along with social determinants of health — make trans people “more likely to experience poor health outcomes.” 

People will read about health disparities among trans people “and just think of that as something that, horribly, is associated with just like being trans, but actually a lot of these experiences have to do with being trans in a world that is constantly oppressing you and where you’re experiencing discrimination both interpersonally but also institutionally and in these broader systems,” said one of the report’s authors, Caroline Medina, a policy analyst at CAP.

The report cites the 2019 Behavioral Risk Factor Surveillance System data collected by the Centers for Disease Control and Prevention, which found that trans people were more than twice as likely as cisgender adults to be told they had depressive disorders. 

Fifty-four percent also reported poor physical health at least one day in the previous month, compared to 36 percent of cisgender respondents, according to the CDC data. Trans people also have an increased likelihood of having asthma and developing cardiovascular disease, according to the CAP report.

The Covid-19 pandemic has also aggravated the health disparities trans people face: 1 in 3 reported having had suicidal thoughts during the pandemic, and 1 in 2 reported that their access to gender-affirming health care was curtailed significantly during the pandemic. 

Ducar said barriers to care, particularly gender-affirming care like hormones, is “really, really harmful, and they add to the layers of discrimination that exists within the trans community.” 

“On the mental health side, we are seeing folks with really complex issues — tons and tons of trauma — that’s coming to our doorstep,” she said. “We’re just seeing a lot of not only trauma, but complex PTSD specifically. These are people that have just been consistently burdened with the symptoms of PTSD, trauma just recurring. It’s really been terrible.”

A lack of cultural competency

When trans people do try to seek health care, they can face discrimination or outright refusal of care, as CAP found. But even when they don’t experience discrimination, they are likely to see providers who don’t have the cultural competency to provide them with affirming care.

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CAP’s survey last year found that 1 in 3 transgender people reported having had to teach their doctors about transgender people to get appropriate care, and 15 percent reported having been asked “invasive or unnecessary questions about being transgender” not related to their reasons for visiting. 

The report cited a 2018 brief from the Kaiser Family Foundation that found that more than half of medical school curriculums lack information about unique health issues the LGBTQ community faces and don’t cover treatment beyond HIV prevention and care, “likely contributing to transgender people’s inability to access affirming care,” CAP wrote. 

Alex Petrovnia, 24, a writer and scientific researcher living in central Pennsylvania, said that last fall, he had to report a primary care physician after a negative experience. 

He was worried about how testosterone would affect a joint problem he was having, and he asked the doctor, who was still a medical resident, whether there was a form of physical therapy to help the problem. After a tense exchange, he said, the doctor told him, “I don’t know anything about this, because I’ve never had a patient like you.” 

“I was trying to keep this interaction peaceable, and I replied with: ‘Yeah, I know. It’s really unfortunate that you’re not taught anything about trans people in medical school, and it’s just not a very well-known issue,’” he said. “And she looked me right in the eyes and she said: ‘I don’t think it’s that important. There aren’t many of you.’”

When he left, he tweeted about the visit so other trans people in the area would know not to see that doctor.

The medical practice reached out to him a few days later and asked what it could do better, Petrovnia said. When he returned to see a new, supportive primary care physician, “they told me that they sent the resident back to trans-inclusivity training and that they had instituted that for all of their residents going forward,” he said. “So that was very positive. … Being the squeaky wheel really actually made an impact and actually improved the situation theoretically for others.”

Petrovnia acknowledged that not everyone is able or willing to spark such teachable moments. 

Mel Groves, 25, visited a primary care office in Montgomery, Alabama, in January when he had a cough, fever and lower body pains. When he was taken back for a full-body CT scan, he said, he had a decent conversation with the attendant who was pushing his chair. Groves said that when the procedure was over, however, the attendant’s tone changed. The attendant had apparently seen Groves’ chart and made a comment about his genitals, Groves said. 

“I was taken aback,” he said. “It was shocking, to say the least.” 

Groves said that he wanted to report it but that he was feeling too ill and overwhelmed, as he was working in the area temporarily. “I knew that that’s what I should have done, but at the time, I had a lot of stuff going on,” he said.

The health care system that oversees the primary care office where Groves was treated could not confirm his story, citing patient confidentiality.

‘The role falls on society’

CAP’s report outlines a number of policy recommendations that the authors said would help address health care discrimination against trans people.

One in particular is among the most pressing, the authors said: They recommend that the federal government create a rule to strengthen Section 1557 of the Affordable Care Act, which prohibits discrimination on the basis of sex and has protected trans people from discrimination in federally funded health care facilities. 

“The protections in Section 1557 are so critical but are also a floor that we need to firmly establish and strengthen,” said Gruberg of CAP. She said it was great that the Department of Health and Human Services’ Office of Civil Rights had announced that it would enforceSection 1557 to cover sexual orientation and gender identity, “but we’re also very worried about what that looks like, how strong these protections are going to be and the potential for religious exemptions to undermine them.” 

U.S. District Judge Reed O’Connor issued a permanent injunction last week against the nondiscrimination protections in the Affordable Care Act, ruling in favor of religious health care providers who said the rules would force them to perform abortions or provide gender-affirming treatment against their religious beliefs. While Gruberg expects the decision to be overturned, she said “that threat is still there.”

The report’s authors also recommended that Congress and state and local governments increase funding for LGBTQ community health centers, which often fill the health care gaps that trans people face.

Groves was connected with an affirming primary care physician through the Knights and Orchids Society, a grassroots organization in Selma, Alabama, led by Black trans people. He drives about 4½ hours from his home in Jackson, Mississippi, to Auburn, Alabama, when he needs care. 

Although groups like the Knights and Orchids Society have provided what Groves described as “life-changing” support, he said it’s ultimately up to the medical system and society to address pervasive issues like discrimination.

“We’ve always been here,” he said. “So I think that now the role falls on society and the medical professionals to educate themselves more. If that means more fellowships, more trainings, more professional development … I feel like that is single-handedly the best thing that we can do to foster better health care for trans people, is helping people to understand how to be inclusive, and then going forward from there.”